Friday, February 26, 2010

Present Imperfect

If you don't look too closely, the physical me from my pre-diagnosis days pretty much looks the same as the physical me now; I still have my full complement of limbs and appendages, though only half of them still function, and even those that work are being trampled on by the incessant march of MS. Upon closer inspection, my very weak right arm and leg have become noticeably thinner, and are often held at strange angles, due to the spasticity and weakness brought about by the disease. So I can't really say the effects of the illness are all that invisible.

Still, if I take the time to straighten out all of the stiff and weak parts (yes, the magic of MS, abracadabra, can make limbs both stiff and weak), and pose myself just so, when standing still in front of a mirror, the guy looking back at me is just about indistinguishable from that healthy fellow I used to know about seven years ago. Of course, the slightest movement shatters this illusion, but somehow I find it comforting to know that I can still approximate "normal", if only for a moment or two, even if it takes a very abnormal amount of effort to do so. Knowing that there is a good chance that I'll no longer be able to pull off this parlor trick at some point in the future makes my ability to do so now all the more precious.

The changes brought on by MS leave me more and more defined not by what I can do, but by what I can’t. As my "can't do" list grows, constant adjustments need to be made, the most difficult of which aren't changes in physical routines, but revisions in attitude, and in the very definition of "self". Who is this new me, this clumsy creature who needs 30 minutes to put on socks, pants, and shirt, and who can no longer negotiate a childproof cap?

We live in a society that celebrates individual achievement, whose very founding document is a "Declaration of Independence". American mythology is stocked with figures that embody the ideal of independence; sports heroes, legendary entrepreneurs, and historical characters who pull themselves up by their bootstraps and battle their way through every imaginable adversity until with sheer guile and guts they eclipse mere success and ascend the very pinnacle of absolute triumph.

We don't generally celebrate folks who can't cut their own pork chop, or button their own shirt. Yet that's just where I now find myself, very often in situations where the mind is willing, but the body is unable. The physical challenges posed by MS come bundled with the mental hurdles the disease erects. Pride and ego are tremendous obstacles, sometimes even more so than an inability to hold a pen. As my disease has progressed, I've found myself increasingly incapable of doing everyday tasks, the kinds of things most people have the luxury of taking completely for granted. Try opening a carton of orange juice or a bag of chips with only one hand. Good thing I still have my teeth, because they certainly do come in handy (pun intended).

Yet, despite my increasing struggles, for a long time I held tenaciously to that ideal of total independence, an overgrown cranky toddler screaming to the whole fracking world, "I want to do it myself!" Caught in a vicious cycle, the more I struggled with some task, the more frustrated I became, which made me all the more resolute that I would do the damned thing myself.

My wife Karen would often watch from the sidelines, silently sensing the importance of allowing me to come, in my own time, to the realization that asking for help would not diminish me in her eyes or the eyes of the world at large. When finally my level of aggravation would hit the red zone, and I'd look reluctantly in her direction, she'd be there to save the day, always in a good-humored and affectionate way that instantly transformed my raging frustration into gentle gratitude.

Overcoming pride, and a lifetime of indoctrination into the tribe of independence, has been one of the greatest obstacles MS has thrown my way. To admit need, to make a declaration of dependence, requires both tremendous strength and a final acceptance of your situation. It's an admission of vulnerability in a world that seems to delight in dismantling the vulnerable, and a recognition that the situation, dreadful as it may be, has become your new reality.

Yet, once the acknowledgment of need is made, a transformation of sorts takes place. The interdependence that we all have on one another becomes clear and unthreatening, and the understanding dawns that welcoming the offer of a helping hand enriches both the helper and the one being helped. Accepting the assistance of a loved one, friend, or stranger not only makes life easier on me, it allows the person offering their assistance the chance to exercise their humanity and to feel good about themselves. In the parlance of corporate psychobabble, it's a classic win-win situation.

I decided, finally, that asking for help simply keeps one from being helpless, and does not represent capitulation or weakness of character. Obstinately struggling with the lid of a jar or with the clunky zipper of a winter coat is just a waste of time, and the biggest lesson that MS has taught me is that time is far too precious a commodity to waste. I can't say I'm ready to spend my life relying on the kindness of strangers, but I can no longer afford to go about avoiding such kindness, either. When all is said and done, we're all in this thing together...

Well-written, MArc. One of my wiser counselors asked me (i had been talking about the surprise "gifts" MS gave me, like time to write and think and etc., taking pleasure in the everyday...and she asked if learning how to ask for help, to be interdependent, rather than independent, was one of those "gifts".I'm reading a book she suggested to me - "When things fall apart" by a Buddhist nun (I'd get her name but the pain gift is rather too intense now) - it is a good contemplative work about just this.

One of my favorite lyric snippets is from U2: "We get to carry each other." I like that they used the words "get to" and not "have to." Everyone gets to carry and everyone gets to be carried. You get help with opening jars; you also get to help others through this blog with your wisdom and humor. Being interdependent is one of the best parts of being human, in my opinion.

Just stumbled on this site a couple of days ago...what a pleasant surprise!My wife and I are big fans already...love rolling down the streets of NYCon yr adventures...this will definitely be part of my daily routine.It's good for the heart and soul. Thank you , bless you & boogaloo !

Well put, Marc. Even though I know that struggling with something I can no longer do is a frustrating, pointless, waste of time, I waste a lot of time that way. Why does it feel like such a deal to ask for help? Maybe it shouldn't, but it does. Thanks for a thoughtful discussion of a difficult topic.

Marc, how is it that you have the uncanny ability to know what is on my mind on any given day?? You must be an angel sent to help me grapple with my inner demons. Thank you for so eloquently expressing what I cannot, thank you for sharing so candidly. Blessings to you and to me and all the others who struggle mightily with this Beast.

I hear ya. Last night I had to ask my husband if there was time for me to have a bath. Of course there was time and the bath did us both a favor, lol.

One thing about asking for help comes to mind. Now that I'm in my wheelchair, when I'm out in public it is easier for me to ask for help than when I was with a cane or walker. I was more tired with a walker and actually needed more help. Maybe I've gotten used to the idea of asking. Maybe somewhere inside it feels more justified (though needing help while using a walker is *very* real).

Peace-thanks for the kind words, and for contributing your poem to my blog. It states the sentiment very well.

Dabble-wise counselors are indeed quite important. Strange that MS does bestow some gifts, even as it robs us blind. Sounds like a good book, I'll try to find it and check it out.

Beth-thanks for the kind words, glad I could be of help.

Hollie-perhaps we should start a "Declaration of Interdependence". You can be our John Hancock, signing it with a flourish...

Tom-glad you found the blog, and are enjoying it. An electric boogaloo, to you, too

zoom-it's a struggle because it requires us to redefine our notion of ourselves. Those notions are built over a lifetime, not so easy to shake...

anonymous-I think it's just that most of us struggling with this illness share many of the same experiences, though we don't often talk about them. Once dragged out into the open, everybody takes a gander and says, "why yes, that ball of confusion does look familiar".

Anonymous-this disease often finds us at a crossroads. I think Yogi Berra once said, when you come to the fork in the road, take it...

weeble-there is something about being in a wheelchair that makes you speak up. We must pick our battles, and choose wisely. Sometimes even a warrior cannot do it all from within.

Having just found you blog a month or two ago, i just wanted to pass along my appreciation and sympathy. I'm not good with words, but your blog captures alot of the subtleties of MS, as well as provides fair and unbiased information which in this day and age is so rarely found online.I myself was diagnosed with MS ten years ago and have gone from biped to triped to quadricle since, the chair being the latest haven as my legs go all nutcracker-like with the lack o'bending. Luckily, I'm still able to keep up with a manual wheelchair despite the too frequent Colorado snows, and when I saw the title of your blog, I thought there's someone I can relate to, and I was gratefully happy to read up. Thank you for providing good and well written words for the MS community. If you're ever really bored, I'll send off my wheelchair in an escalator video for your personal boredom.

beautiful post, Marc. Thank you. The thing is- it's the same for all of us. Even we able-bodied folks sometimes need a hand, just to get thru another day. In recent years, Jeff and I have both had to learn how to ask for help....and in doing so, we've allowed other folks the blessing of coming to our aid. Thanks for sharing your thoughts. They're just what I needed today. Hi to Karen.... xo, Joan

Many thanks for your thoughts. As a 'caregiver' (what a wierd word) I know what it is like to stand and observe as your wife, Karen, does. Sometimes it is simply impossible to know when to keep quiet and when to offer help. But as you point out asking and giving help is what turns all those 'independent' individuals into a community. Together we are stronger. We could live in the country and surround ourselves with razor wire and arm ourselves to the teeth.... Or we cound live in communities and just ask ' how are do doing..' occasionally.

The loss of independence. One of the things that scare me the most about all of this. I am and always have been very strong and independent. No one was allowed to see any weakness or be around when I was vulnerable. Well that all ended about 2 years ago for a couple of months. I've regained most of my independence but I know that I have to overcome my own pride and embarrassment if I'm not to shut out the ones that love and care for me and to get the most I can out of whatever life throws at me. Good luck with your battle. Mine is still being strongly fought.

Very well written and its a truth we never want to face. I do not have MS but my life changed in 1989, again in 1992 then a car accident (when my wheelchair and I were run over by one) changed my life to what it was till two years ago. I was left alone in the world when my parents died. I now have friends who live with me and it is working out well. They get to help and make themselves feel better and I have help its hard to live without.

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...